if my levothyroxine isnt working, i guess my hypothyroidism is being left untreated? symptoms are raging... but doc says i am 'normal' tut

i had a thought today.... if the doctors know that i am hypothyroid,, then y wont they test for more than t4 and tsh for more in depth knowledge as to what is going on? i have to pay for a full panel of the T4 T3 FT4 FT3 and RT3... because my levo isnt working... the docs cant see below the surface... if my tabs arent working, then i am walking around, slowly getting worse and worse, and probably doing great damage to my body because i am basically as yet, untreated? . it looks good on paper, ...all my figures in range... i wish they would look up from their figures and actually see the real person , the real proof of what is going on!

i am getting worse each day, and the docs wont see it that its the tablets that dont work for me... they start thinking, oh , it must be summat else!

i dread them taking their eye off the ball and turning their backs on my rotting thyroid....then i wont stand ANY chance of getting better....

19 Replies

  • Hi Martine, I've been looking through your past posts, and I can't see any results. Have you posted any?

    When people say that the levo 'isn't working', there's several possible solutions. You say you're on a high dose of T4, but I can't see where you've said just how much. It could be that it's just not enough for you. It could be a conversion problem. It could be nutritional deficiencies. But without any labs, it's difficult to say.

    It could also just be that you haven't given it enough time. If you've been hypo for a long time, you aren't going to get better over-night. It could take a couple of years. When you are hypo - i.e. not enough T3 to go round - the body has to shut off a lot of receptors, so that the essentials - like the brain - can continue working. And it's the switched-off receptors that cause the symptoms. In order for these receptors to be switched on again, they have to be flooded with T3. So, you can see, it isn't going to happen quickly. The more receptors turned off, the longer it takes.

    Personally, I've given up expecting help from doctors. They just don't know enough about it all. And, they just aren't interested - thyroid isn't 'sexy', as one doctor put it. They are taught in med school that all you need to do is test the TSH and prescribe T4. Once the TSH is in range, your job is done. And that's what they believe. What they learn in med school is sacred! They don't look beyond that. So, keep nagging at them, and just to get rid of you, they will 'diagnose' something like fibro, or depression. They don't know anything about the symptoms, nothing at all.

    I don't think you're not being treated. You'd probably be a whole lot worse without the levo. And it's possible that a lot of your symptoms are down to nutritional deficiencies - I know mine were! That is why it's so important to get them tested. But, when it comes to understanding the results, and supplementing, you're on your own. Doctors know even less about that than they do about hormones. They just have no idea. And, once you understand that, then you will start researching and learning for yourself, and take responsibility for your own health, as so many of us on here have had to do. You'll get all the help you need on here. And just forget about your doctors. :)

  • thankyou greygoose, you make perfect sense... i am ordering a saliva test for adrenals and in 2 weeks, a thyroid test from blue horizon, the plus 10?

    i will need help for sure on here with the results. I realise now, that this could be quite a journey for me, but am so glad that i can pop on here for advice , help and support.

    The last time i went to the doc, i went to a different one, for a different point of view, she was a horrid , patronising so and so.. she hasnt seen my journey since i was first diagnosed last october, and doesnt realise that i havent made progress...

    i am on 175mcg of levo, and my original doc said my tsh was 0.03 and t4 was over range at21... so i asked him if i should reduce, ...... and he said, its up to you!!!! wtf!

    so i thought i would stay as i am for now and see wot i can find out, by coming on here, gettting some tests , (frustrating as its the wait , as i am not well off)... my last doc said, its prob not my thyroid, and yes... u said it... fibromyalgia or cf... i wanted to scrrrrrrrrrrrrrrrrrrrrrrreeeeeeeeeeeeeeeeeeeeeam......my symptoms are no different than when i first went to docs, though more severe now... i have high antibodies, apparently in the thousands... thats all i was told... i came out of my last consultation feeling desperately lonely and overwhelmingly lost... i wont be going back to her,,, i just worry they stop thinking of me as a thyroid patient and give me some other lala land condition coz they just CANT accept my levo is not working at all. phew, thankyou for taking the time to figure me out lol... i have noticed with this condition i waffle, i feel insane at times... xx

  • It's not that they're being deliberately difficult. It's just that they don't have the in depth knowledge to understand what's happening to you. The doctor that told you to reduce your dose if you wanted to, he was being uncaring, he just had no idea what you ought to do. Of course, what he should have done, in an ideal world, as test your FT3 to see if you're converting. But a) he doesn't have that option, because the labs won't do it and b) he probably wouldn't be able to interpret the results, anyway. Plus, in med school, they are taught that everyone can convert perfectly, that isn't a problem. When, in reality, it's a huge problem - especially for those of us with Hashi's. Doctors are victims of their inadequate education.

    But we aren't. We know that not everyone can convert, and that T4 will not 'work', if your body can't convert it. It's not the fault of the levo, it's our bodies that are imperfect. So, we can tell you, get this, this and this test. And then we can interpret the results. Just as you will be able to when you've had a bit more practice. It's not rocket science. lol

    So, take heart, get the tests, and then we'll see what's going on. :)

  • thankyou@+greygoose. ... i am going to have either the thyroid 10 test or the adrenal saliva test.. which one first.. finances say i can have one a month... i am thhinking the thyroid one first? i am so ill today.. am going to work and bordering on collapse... sometimes i think it would better if i did, then someone would out there would listen xthankyou for your good advice... i look forward to your reply x

  • Oh, the thyroid one first. You don't even know if you have an adrenal problem. It could just be that you aren't converting because you have Hashi's. And there's not a lot you can do about that, except add some T3 to your T4.

  • Martine, a lot of us have been neglected by the medical professionals but thankfully we can manage without them. Do some research at a good website and there are fine videos on you tube and educate yourself.


  • hi.. i bought the book n took it to my docs, ...t he horrid woman said oh, is it american? and slid it back across the desk at me with a smirk and tut... its a brilliant book. x

  • Some people just like to revel in their ignorance. Not a lot you can do about that.

  • i was literally gonna order my blood tests on here then decided to open a letter first.. endo says t4 too high, which i thought so, and also going thru the change, which my doc said i wasnt! so as i have to reduce my dose, i will hang fire on the bloods? will go ahead with adrenal saliva one .... have u ever had that done greygoose?

  • Martine, without seeing your FT3 result, you really don't know if you need to reduce your dose or not. It's the FT3. that is important, not the FT4. Your FT4 could be well over-range, but your FT3 still in your boots, if you're not converting, and lowering your T4 will lower the T3 even more. You really do need those labs before you do anything.

  • Its vital that




    Vit d3

    Are all tested and that they are all halfway in their ranges

    If they are and levo does not work why not simply order NDT

    You are likely to find that makes a world of difference and then you can tell these doctors just how wrong their stupid blood tests are

  • Yep, that's what we are all facing. Damn the NHS!

    Get a full thyroid profile done via bluehorizonmedicals

    Expensive but this is your health. You will then see what is really going on. If you have antibodies you may have Hashimotos which is what I found out going private. I then started NDT and on the whole I'm improving bar hideous itching. Gaaaahhh

    Still brain fog lifted and nowhere near as tired.

    If you are paying for a profile to be done make sure it tests for B12, Vit D, ferritin, folate etc...

    You are likely to be deficient in one or more and GPwon't have tested for these either.

    Thyroid plus T is the test I had done.

  • hi katepots, yes i am gonna get that test done too... i am defo gonna look into ndt... i dont think levo is agreeing with me to be honest... i feel worse than ever, or mayb its because my condition is progressing , as i am not getting the t3 into my cells...

  • It sounds like you have Hashimotos with the high Antibidies.

    You must be gluten free to feel better and dairy too if you can bear it.

    I've done it for a couple of months now and in the first couple of weeks my bloating was so much better and I lost a stone!

    Good luck with tests.

  • yes i do have hashis i think... i did try gluten free for a ..week lol... i know it sounds daft but , i was so stressed that i couldnt keep my eye on the ball... but my bloating went down almost immediately... i am going to go back to it... i definitely do believe diet plays a massive part in all this... thankyou

  • Just to say if you can't bear it right now, gf will always be there for you, and just fyi, while a lot of folk swear by it it doesn't help everyone. I was gf for a year and my antibodies didn't change.

  • Did you get the Thyroid test fine?

    How are you doing?

  • TSH+T4 is their dogma. They have no idea they are behaving like religious zealots. :( In this situation, self-treatment and/or being wealthy are the outs.

  • i agree Eddie83. wen i went to see a different doc, she looked at my 2 lonely little figures of tsh and t4 and said, oh , you must have something else, not thyroid problems as your results are normal! sheesh.....

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